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Terrified of probable crohns diagnosis

I am 32 years old and never experienced any real gastro issues until October last year. I started with vile smelling gas and tugging, crampy tummy pain. The pain went off but it led to a diarrhoea accident in public. This then led to 2 weeks of diarrhoea and on four of these days the diarrhoea turned bloody. I had a stool and blood test done, all fine. I got better for a month then I noticed blood after I had used the toilet a few times. My bottom also felt sore and like there was something in it. Got told I had piles. A month on that all stopped and I ended up getting the diarrhoea back for 2 straight weeks with a bit of blood in it from time to time. Went back to the doctors, stool test, blood test all normal, faecal calprotectin however came back high. I got told I needed an urgent referral within the month and am now terrified. Once again, the diarrhoea has stopped. My main symptom is my upper chest area feels sore, almost like a dull ache which comes and goes, sometimes spreading to the back as well as some acid reflux.
I am scared of:

1. How I will get through the tests, I am very hospital phobic
2. The complications of crohns
3. Being put on meds with nasty side effects. Will they give me urgency and diarrhoea? (I don't have that now) or make me too sick to work? I work with kids and worry I will have to give my job up :(
4. Being at hospital visits all the time. How often do you have to attend them?
5. The thought of surgery.
6. Not being able to eat what I want or go where I want without worrying about toilets. Again, will the meds cause me to get worse in terms of diarrhoea and urgency as at the moment I don't have that?
7. How many meds am I likely to be asked to take each day as I see some people are on crazy amounts and it worries me as to the side effects.
8. Can life ever be how it was before the diagnosis?

I can't believe how this has crept up on me, I used to be so healthy :( Can anyone reassure/offer advice that life can be ok with an IBD?
 
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My first response is try not to borrow trouble. In other words, try not to imagine the worst. I know that is hard since you are facing tests in a hospital setting. Right now, you may have IBD but you could also have celiac disease which is a lot easier to handle. When is your appointment with the consultant? A high faecal calprotectin test means there is inflammation somewhere in your intestines, but not the source of the inflammation.

I’m assuming your consultant will want to perform a colonoscopy and perhaps an upper endoscopy. The most unpleasant part of the colonoscopy is the prep. You will be sedated for the scope(s) and your consultant will be able to view at least part of your intestines. There are lots of other tests, obviously, but scopes are the most common. You won’t be at the hospital for long, and you won’t see very much of it while you’re there. Try to remember that everyone there is helping you and that you’ll be able to leave after the test(s).

My first bout with abdominal pain was due to celiac disease, and I managed very well on a gluten-free diet until I was diagnosed with crohn’s several years later. I’ve managed crohn’s with prednisone and budesonide; mercaptopurine and azathioprine give me severe pancreatitis. Many people achieve remission with these immunosuppressants without having to resort to more powerful drugs like humira or remicade.

Hopefully your consultant will be able to determine exactly what’s going on in your intestines quickly and find the right treatment for you. What ifs like hospitalization or surgery may not ever come to pass for you; it sounds like you feel okay right now, and hopefully you will stay that way.

I see my GI twice a year, more often if things aren’t going well, and I have been hospitalized a few times. Since the crohn’s is located in my small bowel I don’t really have diarrhoea but I do get a lot of abdominal pain. I take medications for both, and sometimes it’s really annoying to have to take medication. My children were 10, 8, and 6 when I was first diagnosed, and I never had to slow down or get help (I was a full-time mother). My first hospitalization was 9 years after diagnosis so I feel pretty lucky, and I haven’t needed surgery. I hope I’ve answered some of your questions!
 
Thanks very much Jaybee.
I had a full blood count and it ruled out coeliac so not sure it is that.
I still don't have an appointment but am guessing it will come later this week. I am scared that they fast tracked it as it must mean the calprotectin level is extremely high :( Why else would they do that?
I am terrified but like you say, need to stop borrowing trouble hard as that is. I only started experiencing symptoms from October (That must have been my first flare) and after that I have had symptoms on and off. It's hard not to freak out and google everything. Some people have a terrible time with crohns and it is scary to see how many people are in constant pain, not able to leave the bathroom, having constant surgeries. I am not helping myself by reading it but it is human nature.

Thank you again.
 
im Thinking you’re in the uk?
This is from nhs

Some people with suspected inflammatory bowel disease who have severe symptoms will need an urgent specialist assessment, the urgency of which will depend on clinical need and might include an emergency admission, but no one should wait more than 4 weeks from referral for a specialist assessment.

Try not to worry, calproctin can be raised by a number of conditions, and it’s a marker for referral for further testing in the first incident .

You will be surprised how you will get through the tests when the time arises, I only leave my home for clinic and tests, and I managed an 18 day stay nite hospital.

Try not to worry too much.
 
Hmm, so it is standard to refer all suspected IBD cases within a month? I got told the calprotectin was high on the 16th Jan and still waiting for the letter to come through. Would have thought if it was sky high they would have called me or contacted me within 2 weeks but who knows. I am just really scared but know I need to be strong. I can let my guard down again when the diagnosis comes in and I finally know what is wrong :(
 
Hmm, so it is standard to refer all suspected IBD cases within a month? I got told the calprotectin was high on the 16th Jan and still waiting for the letter to come through. Would have thought if it was sky high they would have called me or contacted me within 2 weeks but who knows. I am just really scared but know I need to be strong. I can let my guard down again when the diagnosis comes in and I finally know what is wrong :(
I would have thought so too. Sending support. Let us know how you are.
 
Thank you. I am pretty sure I will be diagnosed with an IBD, I just hope my intestines aren't in a really bad
way and that I won't need immediate surgery/really strong drugs which limits my ability to work or function properly. God, this is scary.
 
Everyone is different. I can only offer insight based on my own experience.

1. I too HATE doctors and hospitals. Every dr visit I have still gives me a bit of anxiety. What helped me in the beginning was taking someone with me. A friend or family member, even if they didn’t go in to the patient room I felt better not doing it alone.
2. There are many possible complications of the disease but it varies greatly from person to person. I really don’t have anything major in addition to the disease so far...some joint pain and I do have GERD.
3. I went through several meds before finding one that works for me currently. I had to be very assertive and persistent though to get my dr to change them initially. Reality is you will probably also try different ones as the disease can progress or become unresponsive. I work as a retail manager...on my feet 8+ hrs a day and pretty active. I do have to take it slow some days and when I was very sick took a leave of absence to get better, but I feel I can do my job just as good as anyone else.
4. I only have to go to the hospital when I have a colonoscopy procedure really...had 3 so far, GI just told me I will need them every 1-2 years now. At the worst of my disease I saw my GI once a month, now I am in remission and see home every 6 months.
5. Try not to think about surgery till it is something you are facing, not everyone will need surgery or you could be many years away from it. I never had surgery and I have had the disease 10 years.
6. I had meds that made my pain greater and worse diarrhea...I pushed my dr to change them. Sure I can’t eat some foods, but it’s not a big deal. I just find a substitute. We use ground turkey instead of beef because I cannot tolerate very much beef anymore.
7. I take Prilosec for the GERD one pill once a day and Colazal for the colitis two pills twice a day. Sometimes I get annoyed with the pills, but I will take 20 pills a day over being in pain and on the toilet all day.
8. My life has changed since diagnosis. I do keep note of bathrooms wherever I go and some days I am just too tired to be social, but I still feel I live a great life. I refuse to let the disease define who I am. There are plenty of people in this world that have far worse things happen to them...if they can find happiness so can I.

I wish you all the best and hope you can not stress too much over it. I was a wreck in the beginning but talking to people on here and reading others stories really helped. It let me know that others understood what I was going through.
 
Thank you. I think what I find frightening most of all at the moment is that the meds will make me feel worse then I currently do as at the moment I only have a tight tugging type ache mainly in my upper stomach. If I am put on meds I could end up with diarrhoea and all kinds of problems. I work as a nanny and taking time off for the tests is bad enough let alone waiting to see which meds work :(
 
I will. I may be wrong but if I do have it, it will be mild as I only have an aching, tight stomach at the moment with no other symptoms. I just don't want to be put on steroids and made to feel worse then I do now. Hopefully they can give me something else which will mean I can carry on working and living my life as I am doing now.
 
I’m not entirely sure what meds you have read about that cause severe problems like diahorrea or something else that would seriously affect your life. Most people find medications enable them to live their life as normal. I’d say the symptoms you are describing are more likely to be caused by the disease itself. When I read about Crohn’s and the symptoms, as well as people’s perception of Crohn’s, it is pretty standard that the main symptom is severe diahorrea. Well I’ve had Crohn’s for more than 10 years and never have diahorrea except in rare instances when I might eat something dodgy - just like anyone else. Crohn’s is an individual disease and everyone has different symptoms. Some people have no symptoms at all.

I take one tablet per day in the evenings and that’s it. I have had no side effects from this whatsoever. Most people who do get side effects from this drug, do so quickly and usually discontinue it within a month or two. The rest of us stay on it without problems for many years.
 
Are you only on one tablet a day? That is reassuring.
The thing with me is that my symptoms seem to come and go. I have no diarrhoea now, just a strange tight, aching type feeling in my stomach. I just worry when I read of how people are on crazy amounts of tablets just to get through the day and all the nasty side effects I have read.
I will have to let the GI know about these concerns. I don't know if I mentioned it but I am a nanny and taking time off for these tests is difficult enough let alone the thought of feeling sick/having horrible side effects in the weeks/months afterwards. It's very frightening to think about.
Here's hoping I get as lucky as you when it comes to the right medication.
 

emmaaaargh

Moderator
Staff member
Hi Anxious855. I'm glad you've found us, although I'm sorry you have to be here in the first place! I wanted to come and give my two cents on life with IBD. It's not the end of the world, so please don't panic. I've had Crohn's disease for 10 years now, since I was 9 years old, so I've gathered some experience that I hope I can use to answer your questions with!

1. I was hugely hospital-phobic when I was diagnosed. The two key points to remember are 1) the tests are worth enduring because they will give you answers that can lead to treatment, and 2) you are in control at all times. If you don't know what's going on, ask. If you want a doctor/technician to explain something to you, or you're just really nervous about a procedure, tell them! They want you to be as comfortable as possible. I recently had my first colonoscopy with just sedation (kids are put under deeper sedation or general anaesthetic) and I was terrified - shaking, so fearful I thought I was going to be sick. In the end it was an absolute breeze compared to how worried I'd been beforehand, mostly because the endoscopists were wonderful. So don't be afraid to be honest when it comes to the tests: most people are nervous, but the doctors and nurses will be able to reassure you.

2. There are a few complications of Crohn's. The good news is that not everybody gets them. Those that do occur are treatable!

3. Side effects are a real concern for people with IBD. They should not give you diarrhoea and urgency, no. If they do: report it to your IBD team, and they'll find something else for you. You do not have to put up with life-limiting side effects! When I was on my last treatment before this one, I felt ill for a few days as my body adjusted to the medication. I was reassured it would fade soon and, sure enough, I was up in a few days and spent six years without any further side-effects. In most cases, side effects can be avoided or managed, so don't panic!

4. I am flaring at the moment, but even so, my hospital seems a little stretched so I only see a gastroenterologist once every six months. It should be more frequent than that, but more frequent appointments when you're ill is a good thing. Trust me, there's nothing worse than knowing your treatment is not working and having to wait four months for your next appointment! Once you are stable, your gastroenterologist will suggest widening the time between appointments to about once a year or so.

5. I'll be honest here: the majority of patients with Crohn's disease will need surgery at some point. That's not a bad thing, though. Surgery has developed a reputation as a "last resort" because we only have so much intestine - it makes sense to try and "save" it with medication before you go removing it. However, in some cases it is better to elect for surgery before it becomes an emergency. I have had one surgery to remove a stricture, when I was 11, and it put me into remission for a good few years. It was also probably the easiest procedure I've ever had done - everyone involved was incredibly reassuring, and recovery was relatively smooth. Surgery is not always a last-resort option fraught with problems!

6. Again, the meds should not cause you to get worse in terms of diarrhoea and urgency. If you have an IBD, then the disease might do that, if it advances. My only symptoms were initially pain and weight loss, then the diarrhoea and urgency came later. But that's what the medication is for - to prevent those. In terms of planning to be near toilets and making dietary adjustments: unfortunately, those are just part of life for those with IBD. As I mentioned before, I am flaring right now, and so there are many foods that I know I would be better off staying away from. I also get nervous if I am too far from a toilet, or don't know where the nearest one is. But you don't need to worry about this yet, because you mentioned you don't have those symptoms. So don't worry that it might happen - leave it until it happens!

7. The amount of medications some people are on can seem daunting. However, remember that those are necessary to manage their condition. Some people also have multiple conditions, and need medication to manage each one. It adds up quickly! But the main thing is that the medication is there to help. Nobody wants to take medication they don't have to take, it's necessary. And it's just something you adapt to.

8. YES. This is what keeps me going when I am flaring: the memory of the times I reached remission, and how wonderful it was. I felt like I could do anything. So that's why I am fighting to find the right treatment to combat this flare-up: so I can get back to that. It's difficult, and right now it feels too far away, but I don't give up hope.

Phew, I've written an absolute novel here! But I hope some of the things I've said can begin to reassure you, and make things a little clearer. If you have any further questions please don't hesitate to ask me - and I hope you get some answers soon :)
 
Thank you Emma. I read your post this morning and it was reassuring.
I feel so incredibly nervous about the procedures but like you say, they will help give me an answer and hopefully give me my life back as from my first post on this thread, my quality of life is horrible right now. Not so much because of the symptoms I have had but the anxiety. I still haven't received a referral letter and it has been 16 days now. The waiting and the unknown is the worst.
Thanks for reassuring me about the side effects. I keep hearing of people who can't leave the house as they feel so sick from the meds and about face bloating, severe weight gain and mood swings. I work with children and it terrifies me that this might happen to me.

One other thing, Are you able to eat what you want? Again I keep hearing of people who can barely eat a thing as it sets them off and makes them very ill. I know all these worries seem silly but I just worry my life will be awful and that I will feel worse on the meds then I do now. Right now I feel ok apart from the chest pain. No diarrhoea, no urgency, can eat normally/work etc. I know this is something that will need to be discussed with the doctor as it is one of my biggest concerns.

Thank you again for your help. I will update this thread with anymore questions and updates. Means a lot your response, thank you.
 
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emmaaaargh

Moderator
Staff member
You're welcome! It's no trouble at all :) As to what I can eat: it really depends on how I'm doing. As I mentioned before, I'm flaring right now, which has made me more prone to react to certain foods. For example, the other day I decided to put raw spinach in my lunch and spent a few hours painfully bloated :p Most people only have restrictive diets if/when they flare, and some people aren't affected by the food they eat at all! It's a massively trial and error process, but once you start healing the gut, the ability to digest more 'difficult' things (fibre, fat etc.) returns. One food that I haven't been able to stomach for a very long time is tomatoes (in soup or sauces) but once I reach remission I hope to try again with it :)
 
Thank you Emma, right now I can eat anything without a problem so I worry again that this will change if I am put on meds. It's hard the thought of having these procedures/meds when I feel mainly good.
I really just want the consultation and tests over so I can have crohns as a part of my life, and not consuming ALL of my life.
 
Thank you Emma, right now I can eat anything without a problem so I worry again that this will change if I am put on meds. It's hard the thought of having these procedures/meds when I feel mainly good.
I really just want the consultation and tests over so I can have crohns as a part of my life, and not consuming ALL of my life.
I dont think medicine will have an effext (for the most part ) on what you can and cannot eat.
 
I hope not. All I can see is being put on loads of scary meds, having to eat bland food and always having sjde effects. It's so frightening but the posts here have reassured me a little. Hopefully my life won't have to change too much if at all.
 
Medication will have no effect on what you can or cannot eat. Only the disease has that affect. I can eat anything.

The drugs you are referring to that make you gain weight and give you a round face and mood changes etc are steroids. They are prescribed when someone with an inflammatory disease is in an acute flare and they need to bring the inflammation down. They are short-term drugs with a number of dangerous side-effects if used long-term. Therefore, they are usually only prescribed for a few weeks or couple of months at the most. The purpose is to knock down the inflammation so the patient can then be put on long-term medication that does not have the same side-effects. I have only been on steroids once - when I was first diagnosed. I didn’t really have many side-effects and barely gained any weight unfortunately as I was under weight at the time. I was on the steroids for a couple of months and then came off and started my long-term medication, which is one tablet a day. If you are based in the UK you will only be on one tablet per day too. If you feel too nauseous to even leave the house on this tablet then this medication will be discontinued for you.

I do feel we are jumping the gun a bit here though - it’s possible you don’t have Crohn’s.
 
Also I had surgery in 2011 and it was the best thing ever afterwards. Afterwards I spent months travelling Central and South America including the Amazon rainforest
 
That is reassuring to hear Eleanor especially when I see how many tablets people seem to be on and how they can't eat most foods. I think the unknown is the worst thing. Waiting to be seen, to have the tests and the eventual diagnosis. I do think it is crohns but find it strange that the diarrhoea has stopped and my symptoms come on and off. I do think I will be told it is crohns though.
 
There aren't really that many long-term maintenance oral medications for Crohn's. I suspect the many tablets you hear of may relate to other things as well as Crohn's and could include short-term steroids, pain medication, supplements - vitamins and minerals, and medication that you can take for IBS. There is only 2 oral Crohn's medications you can take at one time - an immunosuppressant and a mesalazine. However, it is now considered that mesalazine is not effective for Crohn's so it is rarely prescribed.
 
It is definitely reassuring to know you just take the 1 tablet a day Eleanor.
All your posts are really helping as it is making me see life may not be as difficult with this disease as I am imagining.
 
Thank you. I am worried I have an intestinal stricture too. Can these normally be treated with medication?
If the stricture is due to swelling caused by inflammation then it can be reduced by medication that reduces the inflammation. But if the stricture is due to build up of scar tissue due to a lot of repeat cycles of ulcers and healing followed by more ulcers, then medication won't make those scars go away. For that you will need some sort of mechanical intervention to remove them - usually surgery or opening the narrowing via an endoscopy probe.
 
Thank you. I am worried I have an intestinal stricture too. Can these normally be treated with medication?
Strictures take a while to form, not just over night.
It’s best to not project worse case scenario at this point.
‘High’ calproctin can mean over 50 to the thousands, it is not used for the diagnosis.
The symptoms of crohns are similar to many many other conditions.
 
Hopefully if I do have a stricture it will be able to be treated with medication.
My doctor said the calprotectin was a very good indicator for IBD and that she thinks I have it even though my blood and standard stool tests have come back normal.
I know some consultants disregard it though.
 
I am 32 years old and never experienced any real gastro issues until October last year. I started with vile smelling gas and tugging, crampy tummy pain. The pain went off but it led to a diarrhoea accident in public. This then led to 2 weeks of diarrhoea and on four of these days the diarrhoea turned bloody. I had a stool and blood test done, all fine. I got better for a month then I noticed blood after I had used the toilet a few times. My bottom also felt sore and like there was something in it. Got told I had piles. A month on that all stopped and I ended up getting the diarrhoea back for 2 straight weeks with a bit of blood in it from time to time. Went back to the doctors, stool test, blood test all normal, faecal calprotectin however came back high. I got told I needed an urgent referral within the month and am now terrified. Once again, the diarrhoea has stopped. My main symptom is my upper chest area feels sore, almost like a dull ache which comes and goes, sometimes spreading to the back as well as some acid reflux.
I am scared of:

1. How I will get through the tests, I am very hospital phobic
2. The complications of crohns
3. Being put on meds with nasty side effects. Will they give me urgency and diarrhoea? (I don't have that now) or make me too sick to work? I work with kids and worry I will have to give my job up :(
4. Being at hospital visits all the time. How often do you have to attend them?
5. The thought of surgery.
6. Not being able to eat what I want or go where I want without worrying about toilets. Again, will the meds cause me to get worse in terms of diarrhoea and urgency as at the moment I don't have that?
7. How many meds am I likely to be asked to take each day as I see some people are on crazy amounts and it worries me as to the side effects.
8. Can life ever be how it was before the diagnosis?

I can't believe how this has crept up on me, I used to be so healthy :( Can anyone reassure/offer advice that life can be ok with an IBD?
Hi Anxious855, you look indeed very anxious.. I'll try reassuring you.

First of all dont worry about stricture, it's very unlikely an untreatable one build up that quickly, so medication will help you get rid of it in case.

Then i'll ask your question
1. Usually you may have one endoscopy every year or two. Which is not that much... bloodwork every 3 months which is positive if you think any other condition may be noticed quickly in case.

2. No complication if you have the right medication. Possible surgery if inflammation lead to surgery or orher complication... statistics say 50% have surgery after 10 years i think... but the thing is medications improved very significantly so it may be lower now.

3. Medication wont give you diarrhea but stop it. And you'lead a normal lifenwirking without restrictions if your treatment is working. If you have nasty side effect you can switch it, there are many now, and they are developing new ones every year as the market for IBD is very rich.

5. Yes its annoying to be at hospital... but unfortunately there is nothing to do... except to think it's a manageable and not life threatening condition.

6. Diet is not so restrictive usually. Diarrhea will get better with medication not worsen.

7. Not more than one a day... maybe one every 2 month if biologic

8. Yes
 
You are all really kind, thank you. Can anyone explain the procedures such as endoscopy and colonscopy to me? I am terrified of them and how painful they will be. I also worry about swallowing for the endoscopy. As everyone can tell I have an anxiety disorder so this amount of worrying is really taking its toll on me. I feel very grateful that you have all been so kind and helpful. It has really helped me see things in a more positive light.
 
You are all really kind, thank you. Can anyone explain the procedures such as endoscopy and colonscopy to me? I am terrified of them and how painful they will be. I also worry about swallowing for the endoscopy. As everyone can tell I have an anxiety disorder so this amount of worrying is really taking its toll on me. I feel very grateful that you have all been so kind and helpful. It has really helped me see things in a more positive light.
With the colonoscopy, they put a scope up through your bottom to look at your intestines. They usually put me to sleep . If you have a hobby, it might do good to get involved with it. Stress will be hard on your body.
 
In the UK they only sedate :(
Some say it is really painful especially if you are of a small build (I am). I am worried about not being able to swallow when it comes to the endoscopy as well.

I am such a wreck :(
 
In the UK they only sedate :(
Some say it is really painful especially if you are of a small build (I am). I am worried about not being able to swallow when it comes to the endoscopy as well.

I am such a wreck :(
In the US they usually don't put you fully under for a colonoscopy or an upper endoscopy. What you get is the "twilight sleep" - well sedated and sort of half asleep/half awake. I felt no pain and can barely remember any of my colonoscopies - sort of like a faraway dream where you can hear voices of the doctor and nurse talking but you are not really "there."

For the upper endoscopy you don't have to swallow anything. The doctor inserts the probe and you basically dream on - only barely aware of what's happening.

Hopefully, this is the same sort of sedation they use in the UK.
 

emmaaaargh

Moderator
Staff member
I recently had my first colonoscopy 'awake', as children are usually fully sedated over here, to the point where it felt like I was fully put to sleep during my childhood scopes, even though I wasn't. I worried myself into an absolute panic up to the day of the scope - I was also terrified of how painful it would be. And really... it wasn't. A standard medication combo for a colonoscopy in the UK is midazolam and fentanyl - a sedative and a painkiller. I immediately felt much calmer and was able to chatter with my endoscopist and the nurses about my university studies, although my thoughts were a bit harder to gather because of the sedation, like being slightly tipsy or very tired. The scope itself was, for the most part, entirely painless - and I am only 5'0, so I was terrified of it being difficult to navigate/the scope being HUGE in comparison to me/a million other things. Mostly, I didn't feel it at all. I felt discomfort when they were trying to get through a difficult piece of bowel, but this was a sensation like really uncomfortable trapped wind. It wasn't that bad for me, but they gave me more painkillers anyway! I haven't had a conscious upper endoscopy, so I can't offer you any advice there, but I know from previous experience that they are usually over quite quickly so it won't last long!
 
Thank you. I have such a strong gag reflex so am terrified of the upper endoscopy. Some
people have said it is over within 5 minutes so am hoping that is the case with me.
I think I will just have to tell them my fears in the hope that they will sedate me more. I can deal with a few minor stomach cramps but don't want to be in agony, I won't be able to let them continue otherwise.
Do you get told the results straight after? I am at that point now where I can't stand the waiting anymore and just want to be told. I am hoping the waiting for the procedures/results is the toughest bit.
 
If they see something obvious they will discuss with you, but the biopsy results take about 6 weeks to come back.
Waiting is frustrating, but part of life.
 
So at least I will know on the day.
Another question, is it possible for Crohns to get worse as time goes on? Right now I feel I am a mild case especially in terms of not being sick and having fully formed non bloody bowel movements each day.
 
I’ve been completely asleep for all my endoscopes, even though it’s called conscious sedation. Here in the US my GI uses versed and fentanyl for endoscopes. He also numbs the back of my throat with a spray. I’m assuming they use similar medications in the UK. My GI usually tells me how things look and gives me a few pictures that day, but the pathology on the biopsies takes a week or two.

The course of IBD is very variable. Since you’re not feeling too bad right now just go with that; continue to treat your body well and follow your GI’s advice.
 
Does IBD get worse and worse as time goes on?
I am so scared of the procedures, I just hope they don't really hurt
It does not necessarily get worse, it is not a degenerative disease, but if inflammation is not under control then it get worse over times as the intestinal tissue deteriorates. It may takes a lot of years to really deteriorate to the point you'll need a surgery but it's useless to think about the worst case scenario now.

Procedures are not so scary but of course not pleasant.

Try to relax till doctors find a diagnosis, and then focus with them on the best possible treatment to have your normal life back :)
 
I think I have only had IBD since late September last year so hopefully there is not too much damage. I see there are people who have had undiagnosed IBD for years and not needed surgery so hopefully I won't have complications or need to have surgery.
 
Hi Anxious855, I had an emergency surgery and 40 cm of my small bowel were removed, I didn't had the time to worry about it.

As for Hospital, I have been internet three times since last november, not to mention 3 trips a day to Hospital in order to change bandages so, after a while, I knew every nurse and doctor and we developed a very friendly relationshop pretty quick.

You won't be Hopital phobic for too long, we just get used to it and learn how to spend our time in there (I played Playstation Vita, Nintedo 3DS, read on kindle...) :)

Don't worry too much. It is what it is. I can't eat enything I want now but there's a lot of good stuff I still can eat :)

Don't assume the worst. Judging by what I have been reading here every Crohn case is different.
 
Very down. Had a colonoscopy on Monday and it showed inflammation throughout the whole colon which is very bad news :( Consultant said he doesn't know whether it is crohns or ulcerative colitis but biopsies were taken. It was a painful scope.
Very worried now as have been on steroids four days and still have stomach aching. I worry this is my life now and I will never be painfree. It's an unbearable thought, I can't live like this :(
 
Very down. Had a colonoscopy on Monday and it showed inflammation throughout the whole colon which is very bad news :( Consultant said he doesn't know whether it is crohns or ulcerative colitis but biopsies were taken. It was a painful scope.
Very worried now as have been on steroids four days and still have stomach aching. I worry this is my life now and I will never be painfree. It's an unbearable thought, I can't live like this :(
Sending support. It does get better.
 
Very down. Had a colonoscopy on Monday and it showed inflammation throughout the whole colon which is very bad news :( Consultant said he doesn't know whether it is crohns or ulcerative colitis but biopsies were taken. It was a painful scope.
Very worried now as have been on steroids four days and still have stomach aching. I worry this is my life now and I will never be painfree. It's an unbearable thought, I can't live like this :(
I am on my second Remicade infusion. Next week will be third. Except for external fistula complications I'm not in pain and can consume red meat, Bacon, stuff With sugar etc With no pain at all.

Crohn is not the end. There is tratament. I took from end november to march in order to things start getting better. It takes some time but you have zero reason to lost your hope so soon :)

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I just worry that the meds aren't working and that the consultant will be shocked and say I will have to have a bag as I have heard there aren't many IBD meds they can use. I shouldn't still have stomach ache and diarrhoea now, it has been 4 days which isn't much I know but it should be kicking in by now :(
I hate this disease.
 

my little penguin

Moderator
Staff member
You can get to a new Normal honest
My kiddo was dx at age 7
He is now 14
No bag
Very few thoughts about Crohns
Takes his meds every 4 weeks
And sees a GI every 3-4 months

GI damage takes to heal
It will get better with pred and other meds
Some use formula instead or in addition to pred

Good luck
 
So it is normal for it to take weeks to see an actual improvement? Glad your son is doing well. I so hope my life will be like that and that being in pain/discomfort everday won't be my new normal.
 
That is good to know. I thought it would be only days to see an improvement. I started the full set of meds on Tuesday and although it has sorted out the urgency, stopped the night time trips and reduced the diarrhoea dramatically, I still worry that it won't get rid of the diarrhoea entirely or sort out the intestinal aching. Guess I just have to give it time?
 

emmaaaargh

Moderator
Staff member
There is a LOT of waiting to see improvement with this disease, unfortunately. Remember that it takes time for damage to build up in the digestive system - so healing isn't instant, either, and it takes time. So don't forget that things will get better! It'll take time, and a LOT of patience and maybe tweaking with meds and lots of monitoring, but you will get to a point where you will barely even remember you have IBD. And it will be worth it. :)
 
Thank you Emma. So it is normal for things to still not be 100% at this point? It has only been 4 full days on the meds, I just worry they aren't doing what they should be doing and that the consultant will be shocked to hear I still have diarrhoea 2-3 times a day and aching intestinal pain. I am just scared they will suggest a bag :(
 

emmaaaargh

Moderator
Staff member
4 days is almost no time at all - that you're seeing some improvement right now, though, is absolutely a positive sign!! It took me close to a week before I started feeling good on steroids, and I was on IV steroids at the time, which work faster than oral steroids. So (although it's hard) have patience :)

And - a word on the bag - I know it's almost every patient's worst nightmare when they first get diagnosed. I was terrified of the concept and my parents were too, because my grandma had bowel cancer and even still declared she would never have a bag. It took me 10 years to stop considering the possibility with blind terror! But surgery is not normally a 'first option', so please don't panic about something that hasn't even been suggested yet. You might never need an ostomy. So please, focus on the options in front of you right now, instead of spending so much energy in fear of something that might never happen. Take things day by day, and your recovery will be smoother. 💜
 
4 days is almost no time at all - that you're seeing some improvement right now, though, is absolutely a positive sign!! It took me close to a week before I started feeling good on steroids, and I was on IV steroids at the time, which work faster than oral steroids. So (although it's hard) have patience :)

And - a word on the bag - I know it's almost every patient's worst nightmare when they first get diagnosed. I was terrified of the concept and my parents were too, because my grandma had bowel cancer and even still declared she would never have a bag. It took me 10 years to stop considering the possibility with blind terror! But surgery is not normally a 'first option', so please don't panic about something that hasn't even been suggested yet. You might never need an ostomy. So please, focus on the options in front of you right now, instead of spending so much energy in fear of something that might never happen. Take things day by day, and your recovery will be smoother. [emoji171]
I agree.
 
Thank you, that is good advice Emma. Thinking logically, if the diarrhoea and urgency have slowed to almost nothing then it seems unlikely they would suggest a bag based on just the fact that my stomach aches. Hopefully there is something he can give me which will ease that. I really hope so. My colonoscopy notes showed my whole colon is inflammed so I am assuming it will take more time over someone who has just half of their colon affected. There is a lot of inflammation to work on.
 

my little penguin

Moderator
Staff member
Yeah that
Plus you are only on pred
There are many levels of meds
Plus many medications to try first
All before any surgery
So just trying them alone is years
Most work
Just takes time
 
Yeah that
Plus you are only on pred
There are many levels of meds
Plus many medications to try first
All before any surgery
So just trying them alone is years
Most work
Just takes time
This.

It takes time to heal. Now imagine that in me started with small bowel rupture and emergency surgery.

It takes time and patience.

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Thank you guys. Reassures me to know I am not alone in not seeing a massive improvement in just a few days. I didn't realise it took a long time for the meds to start working. Thing is, they did my colonoscopy, did a brief write up saying inflammation throughout whole colon and then it was a case of off you go.
I am glad there are other medications available should I still be suffering. Like I said before, my main worry is I will be told to suck it up and accept I will always be in discomfort. Hopefully not.
 
Just an update. Very down today. Consultant said the inflammation wasn't as bad as some he has come across but that it is severe. Tapering down the steroids week by week and sadly, I think once I stop or ease those off, the symptoms will reappear so he said in that case, another stronger medication will be used. I can't remember the name.
After that, who knows. Probably a bag. :(
I feel very scared/upset/anxious/overwhelmed.
 
Just an update. Very down today. Consultant said the inflammation wasn't as bad as some he has come across but that it is severe. Tapering down the steroids week by week and sadly, I think once I stop or ease those off, the symptoms will reappear so he said in that case, another stronger medication will be used. I can't remember the name.
After that, who knows. Probably a bag. :(
I feel very scared/upset/anxious/overwhelmed.
Everyone is here to support you
 

my little penguin

Moderator
Staff member
Can they start you on a maintenance med prior to coming off steriods ?
That is pretty standard
Can you get a second opinion ?
 
I am on mesezaline however you spell it but also on steroids. Once the steroids stop the mesalazine may not do the job on its own
 

emmaaaargh

Moderator
Staff member
Does the consultant think that? The next med on the list will probably be azathioprine. It takes 3-6 months to build up enough in the body to become effective, so if your disease is severe it makes sense for you to be started on it now, so that by the time you're off steroids, it's already kicking in (and you won't have a 'dip' in the middle!). Unfortunately, I've found that lots of GI consultants rarely think so logically...

Don't give up hope. If that doesn't work (and that's a big if), there are many more meds to try. I can name at least five off of the top of my head, and there are different combinations that can be tried as well. So please don't panic! It takes time and lots of trial and error, but you'll get there, I promise.
 
He hasn't said it, I am just worried all meds will fail. Just panicking I guess.
Yes, that was the name of the next medication that he mentioned. Now you mention it, I wonder why he didn't put me on that first along with the steroids especially when he says my case is severe.
Thank you for the reassurances, it really helps at the moment especially when I am in panic mode. It's good to know there are other options out there and that there are a good few to try first before surgery.
 

my little penguin

Moderator
Staff member
There is a very long list of things to try
8 years later my kiddo still has options
And has tried
Three biolgics
Two immunosuppressants (6-mp and mtx)
Two 5-asa(Pentasa /asacol)
Plus combos of each
The most trial was over the first year of dx after that
Many years on come combos
But there is almost always something else to try
He is good Crohns wise
So much so 6 out of 8 scopes looked perfectly healthy normal as a normal person without ibd would look
 
Is he painfree most of the time? It's reassuring to read it takes time to find the right meds and that it won't automatically mean a bag is suggested if one or two options don't work. As he said I have inflammation in the whole of my colon I worry I will be harder to treat. He hasn't said that but compared to someone who has left sided UC only, my meds have to work a lot harder. As Emma said, I should have been put on the azathioprine first.
 

my little penguin

Moderator
Staff member
He is pain free from Crohns
Had inflammation from stomach to anus at dx

He has arthritis as well
This was dx later so that is his difficult dx

No mention of stoma
Kids tend to have much more agressive disease than adults
Even the kids I know dx at age 5
Now 16
Have been through multiple meds
Surgery twice
But no stoma /bags at all
That’s woth 10 years of disease ;)
 
Starting to taper down the steroids now and am worried my symptoms will come back once I am off them. What do you think will happen if this is the case? Will I automatically be put on the stronger maintenance meds and if they take 3-6 months to work, what am I meant to do in the meantime? I can't have non stop diarrhoea and urgency for all that time. Those are my main symptoms when flaring, severe diarrhoea and urgency.
 
Your fear is a reasonable reaction. At least you are aware of the fact that something isn't right. Many people ignore or deny medical symptoms because they desperately want to keep up an illusion of still being perfectly healthy, especially when it comes to long term problems. This will only delay treatment which will increase the risk of possible complications. I personally believe there are many people with Crohn's who have a good quality of life with the right medical plan but you don't hear about them here because they are focusing on what they still can, and are busy doing that. Surgery, hospital visits and having a not so good time isn't great but things have to become bad before they can get better again. This will sound kinda harsh but don't focus too much on what you can't control and try to stay positive. At least this is chance to work on your hospitalphobia. There will be many more instances besides possible Crohn's where you will need a hospital. For example for your future child. Don't be like my mother who refused to take me to the dentist because of her own fear.
 
I don't want kids of my own but I get your point.
I got diagnosed with ulcerative colitis (pancolitis) last month.
I'm sorry to hear about your diagnosis. I hope you will get through the struggles so that your path towards the right treatment will start sooner.
 
Thank you. I am on steroids and mesalazine at the moment but have been told that once the steroids stop, it will be 50/50 as to whether I will remain in remission
 

cmack

Moderator
Staff member
Hi Anxious855,

I'm here if you ever need to talk, pm's are fine too. I have unspecified IBD and I know my way around a hospital. Best wishes to you.
 
Think I spotted blood when I wiped just now and bottom feels quite sore still. Not sure what to do. Do I wait for it to happen again? Call the doctor asap? This isn't a good sign and I am freaking out.
 
Are you still on prednisone? How far along are you on your taper? I would definitely call your consultant tomorrow morning and at least speak to your IBD nurse (I'm assuming you have one; most UK patients do). Your consultant should know you are having symptoms again.
 

cmack

Moderator
Staff member
My doctor wants to know if I see any blood. I would call his/her office if in any doubt. It's always better to be on the safe side, this stuff is no picnic. Good luck.
 

Lynda Lynda

Senior Member
I have dropped down to 4 steroids. Terrified as to what they will suggest next,
If I see it again, I will call them. :(
I also suffer from anxiety and panic. I am a chronic worrier. Maybe you could incorporate some coping skills into your daily life that would work for you. Listening to relaxing music, meditation, deep breathing, exercise, making art, journaling, writing a "grateful" list, reading, watching a good movie or TV show, cooking.

I take comfort in the "little" things in life. It was a very breezy day the other day; actually the wind got mighty strong. I opened my window in my apartment and just listened to the wind and to the leaves in the trees. It was relaxing.

Take Care. Lynda. 🙂
 
Yes, I do need to start learning ways to relax. I am just scared of going back to how I was. Dangerously underweight, constant diarrhoea day and night. I don't know how I got through it and I couldn't do it again.
 
Feeling very tearful and scared. Am down to 10mg pred now and I ache all over. Most worryingly, I am starting to get some aching back in my stomach. Terrified all the symptoms will come back again once I am off pred in a week.
 

my little penguin

Moderator
Staff member
Weaning pred can cause symptoms as the body gets used to the lower dose
Ds gets symptoms for 2-3 days for each time he lowers the dose of pred
Sometimes we wean slower
But stillgets symptoms
Each time the dose goes lower
Then

2-3 days after he stops pred
But after that it levels off


Good luck with the wean
 
I am down to 10mg now and had no side effects up till now. My legs and arms ache and my stomach is beginning to as well. I am just worried I will be one of these people who are steroid dependent and can't stay in remission without them. It's a terrifying thought.
 

my little penguin

Moderator
Staff member
When you go to 10 mg or below is when symptoms show up more from withdrawal
Steroid dependent folks just means
You need a maintenance med such as 5-asa ,6-mp, aza, mtx
Which is used instead of pred
You don’t stay on steroids
You just stay on a maintenance med
 
Feeling very tearful and scared. Am down to 10mg pred now and I ache all over. Most worryingly, I am starting to get some aching back in my stomach. Terrified all the symptoms will come back again once I am off pred in a week.
Let your doctor know. You might have to go back up on the dosage.
 
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